5 replies to this topic

[Kel29]

I have recently been diagnois'd with Narcolepsy. I am always tired and have a toddler that I need to chase daily. I feel absoultly worthless most of the time, due to the fact it can take days to any project. I am scared to drive because I am so sleepy so I only do short trips. I went back to work after my son was born and had to keep cutting my hours back. I was going to bed before my infant and even after taking a nap on my lunch break. Wow did I feel like I was losing it. All the Drs said I had post-partum and I new it was way worse than that. Now that I no what I have I am trying to do as much research as I can. I have serve anxiety/depression and the provigil they think made it worse so we are waiting for the other meds to kick in then I will try the provigil again. If anyone has any insight to this illness please respond! Does it ever get better or will it get worse!

[WakeChallenged]

I don't know if it gets any better, we can only hope it does. I too was recently diagnosed with Narcolepsy. I have been tired my entire life and until a few months ago, I didn't know why. I remember about 15 years ago I went to a doctor, told him how I was tired all the time, had no energy, etc. I could have kicked him when he told me I was just depressed and there was nothing wrong with me. I told him the only thing depressing was that I was tired of being tired and no doctor could figure out what was wrong.

I know how you feel about driving. I'm afraid to drive any length of distance. I have been riding with a couple of friends to work, but I may have to start driving again and it makes me nervous because it takes about 50 minutes to get to work. My most recent visits to my doctors, (neurologist/pulmonary/primary) advised me against driving lengthly distances. My neurologist said I could probably do okay driving to work in the morning but had serious concerns about me trying to drive home, and did not think I would be able to do it. I think the neurologist is right, I don't think I can do it either. My doctors just increased my meds to try to boost my ability to stay awake in the afternoon. I have way to many episodes of sleep attacks, especially in the afternoon/evening. So, I don't know what I am going to do if the increase in meds don't work, I need to check out other options to figure out what is available to me (like finding another job closer to home).

I was told it may take up to a year to get the meds adjusted just right. I do believe the meds are a God send, because I know how I felt before I was diagnosed with Narcolepsy and how I have felt since being on the medication. I don't know how in the world I ever functioned before I started the medication. I think we just have to keep telling ourselves it will get better; after all, we were finally diagnosed and that's a start!

[nobli001]

I feel very similar. When I first sought help, I could hardly get out of bed and when I did make it to the couch, I continued to on and off for 6 more hours. (So, why then did I have to take Ambien every night to go to sleep). I was the mother of 2 small children and my husband was moblized out of state then to Afganisatan for total of 20months. My children were detroying our dream house with permanent magic markers, choc syrup, etc. Luckily I knew the wife of a nuerologist specializing in sleep disorders at Duke. Instead of the 6month wait for new appts, I was in in 10 days. MyPMD had already ordered a night sleep which only showed severe delay onset of sleep, desite 10mg ambien x2. He ordered a MLST which was as abnormal as it gets. Asleep in <6 sec x2, and under 60 sec x3. REM onset in less than 3 min x3. At that time, I denied any cateplexy, or vivid dreams. Did I mention that at 0830 in the am, on the way to get my MLST results, I pulled right out in front of a car at an intersection. 2 years later after reading info on this site, I know know why I did that. I was started on 200mg Provigil to start. For the first time in years, I was able to wake up before my kids. However, I could not get off the cough. I was too tired to watch tv even. Before, I would at least be much more active in the pm and night and now I cant't even do that. I eventually went up to 600mg/d with no change. Oh yeah, I also have chronic daily migraines and this made my migraines worse. The doctor was afraid that a stimulant might do the same. I was at the end of my rope and called every psychiatrist covered by my insurance to see who would see me first. I did this because I had many of the criteria for adult ADD and the treatments are largely similar. He started me on 10mg Adderal XR and my concentration and enengry level and memory were all greatly improved. That lasted abot 6 days and then stopped working. He said that was common when it works but the dose is too small. I eventually ended up on 30mg XR and 15 on regular qam. During this time I kept attempting to take various preventatives such as topamax and zonegran but I couldn't take the smallest dose without making me more sleepy than I already was. (At one time I was on 300mg topamax/d and now I couldn't get past 25 mg. I finally found a neurologist who actually listened to me and was commited to helping with my migraines. I also saw another sleep specialist for repeat sleep study, which revealed some sleep apea. I tried to explain to her that I did not think that was my problem. Meanwhile, I was to be hospitalized by a collegue of my favorite nuerlogist (he doesn't admit patients to the hospital). When I met her for the first time, she also listened and said lets do the genetic blood work to know for sure. Sure enough it was positive. That was two weeks ago. After talking to my mom, turns out that my maternal grandmother also had narcolepsy. Her main symptoms were cateplexy and was a lot different than mine.

I was off Adderall for a while and dowing okay, but now I back to 30 of XR and 15 of regular and still have significant day time sleepiness. Oh yeah, my husband is back in Afganistan for another year.

[Snoozy Suzy]

Hi. I'm new to this site. My name is Suzy. I'm a 27 yr old working mom with narcolepsy. I have not received my "official diagnosis" yet, but after doing some research and meeting with a sleep specialist, I know I have it. The sleep specialists agrees. He said we just have to do the test to prove it. I'm scheduled for the end of the month...
I am so overwhelmed with information and overflowing with mixed emotions.
Now that I know what it is, I realize I've had it since at least my teens, possibly all my life. My symptoms have gradually getting worse since my early 20's. That also happens to be when I had 3 kids almost 1 after another. (not on purpose.) I just figured I was worn out from being pregnant, then up all night with babies and still working full time. I'm sure those things didn't help, but I no longer believe that was the only cause. My youngest is now 3 1/2 and has been sleeping well since about 6mnths....and in the last 3yrs, I have just gotten worse.. I knew something was wrong. It still took a while to see the Dr. When I finally did, like many of you, I endured test after test and diagnosis after diagnosis. I was really frustrated when my Dr. told me I was so tired because I was depressed. I just wanted to scream!! It was like he hadn't been listening at all. I was depressed because I was tired, not the other way around. But I was desparate, so I tried countless anti-depressants. None of them did anything for me...except prozac caused me to lose a lot of weight..something I don't need. As I continued to get worse I started doing research on my own and began to suspect N. I asked my Dr. about it. He didn't seem too convinced, but referred me to a sleep specialist anyway. And like I said, He and I are both convinced.

At first I was soo relieved to finally be getting some answers. Now that its starting to sink in a little more, I'm really taking it hard. I've been crying a lot the last couple of days. I feel like I've been handed a life sentance. The idea of it continually getting worse over the years really frightens me.
As I sat and read through these discussions, I had tears streeming down my face. It is comforting to finally find people I can relate to and who will understand what I'm talking about instead of criticizing, thinking I'm lazy, or a hypochondriac etc... It's also sad that we all seem to have felt that isolation because no one understands, and that we have to go through years of tests and misdiagnosis before we find somebody, somewhere who realizes what we are describing. It's so hard when you know there is something wrong, but you don't know what....And the Dr.s can't seem to find anything. It's so hard on self esteem, and relationships :cry: .. and also makes work really challenging.
Well at least I have some answers now, and I'm not alone. My husband seems to be a little more supportive now, although I still don't think he fully comprehends what I'm feeling. At least he's trying. That's all I can ask.
I'm on such an emotional rollercoaster. I guess it's going to take me some time to get used to this. Hopefully in the future I will have more uplifting posts.

[lizfromli]

I am 25 and do not have any children. Looking back, I started having symptoms of Narcolepsy shortly after graduating from college in 2004, and was fortunate enough to be diagnosed (and basically introduced to the concept of Narcolepsy) by the Spring of 2006.

I can remember finally being relieved when I had an actual diagnosis, on paper - for a condition that actually took into account ALL the crazy symptoms that had been sabatoging my life. Things were looking up.

Then you realize, "I am now drug dependant ... this is going to be for life ...Provigil costs a lot of money...what happens if I were to lose my insurance benefits or my job...moving from state to state I had to wait forever before I could get an appointment with a new neurologist... time lost...then I have to run in circles trying to get the meds every month as most are controlled substances... driving at distance or when alone and/or tired being a major challenge..."

But at the same time, you have to remember to focus on the positives as well; "this isnt a condition that gets worse with age- in fact, life can get easier in later life...I have settled into a job where I can enjoy added stability and have found a really great doctor who always greets me with a smile and is excited to see me once a month... I was hesitant, but adding more drugs has improved my work week dramatically.. adding Dexedrine (stimulant) and working to increase the timing and dosage to fit my schedule has been very helpful... finding alternatives to transportation when possible or finding the best parking lots to sit for a quick few minutes of sleep on the drive home has helped..."

Long story short, the diagnosis is definately not the end, but it is the start of YOUR beginning. Everyone seems to respond very differently to N and everyone has their own list of complications. I think the key is to be involved in your own treatment - doing all you can to establish a workable rountine and then working to stick with it... I have worked as an educator and kids will also benefit from daily routine - a perk, they are still so young and impressionable, you can use them as added inspiration. I struggle with the fact that I dont have a family to focus on, I live alone and dont have many friends in my area, and dont have a boyfriend or husband to interact with daily... theorectially I am supposed to be a "single twenty something socialite, carefree and full of energy" not an "alcohol free, chemically dependant narcoleptic with a regular bedtime who takes naps" --- Game on!

Best of Luck!

[ineedanap]

liz that last few lines was fun e! im sitting here in tears cuz im so frustrated i wanna screammmm! and that gave me a great laugh, thanks :wink: